PART 2: Response to the survey
by Richard Kilborn
(Part 1 of this blog series accessible here)
Having put together a questionnaire made up of twenty questions, the next step was to approach a small number of local organisations whose members might be reasonably supposed to have an interest in hearing loss and memory loss. The Stirling University Retired Staff Association (SURSA) and the Forth Valley University of the Third Age (FVu3a) were obvious target groups, but we also attempted to access a wider demographic by inviting members of the local community, including students and staff members at Stirling University, to give us their views. The letter of invitation that went out to these local organisations was worded as follows:
Two Stirling-based organisations have joined forces to explore how people talk about common health conditions, focusing in particular on hearing and memory. They are inviting people with an interest in these issues to complete an anonymous survey. The survey is relevant to everyone, irrespective of personal experiences of hearing or memory.
The project is seeking to identify how well equipped we are to talk about common health issues, and whether the way we talk about them is the same or different to the way they are talked about by people and organisations seeking to offer help, support and information.
Respondents were encouraged to complete the survey online, though provision was also made for those who so wished to complete a paper version of the survey. Particular attention was paid to making the survey user-friendly and ensuring that the language used was accessible as possible. At the end of the survey an invitation was extended to anyone interested in the issues raised to participate in a follow-up Focus Group discussion or in a one-to-one interview. And mindful that we also had a duty of care to our respondents we also provided details at the end of survey of organisations and agencies offering individual help and support if required.
Some initial thoughts on the survey findings
Given that the survey was conducted in May 2021, at a time when a number of Covid restrictions were still in place, we were encouraged to discover that 63 people in the area responded. Perhaps unsurprisingly for a survey addressing this type of issue, we received twice as many responses from women as we did from men. The vast majority of respondents, more than 70%, were in the 55+ age group. Also of some significance – given the nature of our inquiry – was that in answer to the question whether anyone in their close family or friendship groups had some level of hearing or memory loss, two thirds of our respondents replied that they knew someone with hearing loss and almost the same number had a family member or friend with memory loss. When asked to supply additional information about this, several respondents commented on the impact that this condition had had on family relationships. People also remarked that this had markedly increased their own anxieties that one day they would be likewise affected.
The other finding that we found somewhat surprising was respondents’ assessment of their own hearing and memory. When asked to rate their hearing on a scale ranging from ‘Good/Very Good’ to ‘Profound or total hearing loss’, more than 60% placed themselves in categories in which there was some, or even substantial hearing loss. By contrast, when asked to assess their memory ability almost half of those who chose to respond currently rated their memory to be ‘Good or Very Good’.
Talking to others about health conditions
In response to our question as to how they would be likely to respond if they discovered they themselves had symptoms of a health condition, most people were in agreement as to how they would react and agreed that they would be “happy to share their feelings of concern with someone they trusted”. 75% of respondents also stated they would readily seek medical advice. A slightly more surprising finding – given widespread assumptions about the supposed reluctance of some members of the older generation to use digital technology – was that more than 75% of respondents told us that if they discovered symptoms, they would seek out relevant information on their condition on the Internet.
When providing information about how easy they found it to open up to others about health conditions, one or two of our respondents took the opportunity to tell us that it was only as a result of painful experiences that they had gained the necessary confidence to express their concerns. As one person put it:
“I have had various bad experiences with doctors and family not believing me in the past, but I am now generally able to talk about things.”
Another respondent spoke very poignantly about how, in earlier years, they had developed strategies for not talking openly about anxieties over health concerns. It was only with hindsight, however, that they had come to realise that this was very detrimental.
There’s more to communication than merely words
Though our survey was principally concerned to discover more about how people verbally articulated their concerns about hearing and/or memory loss, we were also aware that some would have greater difficulty than others in expressing themselves. When specifically asked what level of difficulty they encountered in this respect, most respondents chose to agree with the statement that they “found it relatively easy to put into words what they were feeling or experiencing”. Yet at the same time, most people thought that it was important to recognise that non-verbal language, including gestures and facial expressions, were also significantly involved in the expression – or concealment of what a partner or loved one might be concerned about.
Respondents had some pertinent comments about how revealing a loved one’s body language could be. Here is what one person had to say on this issue:
“Some people don’t want their body language read, which can make things harder. You might be able to tell something is wrong, but not what. And if they don’t want to tell you [verbally] what is wrong, there isn’t much you can do.”
Another respondent provided an insightful comment on how, faced with the problem of having to communicate something of some importance to another, they used to go through a silent mental rehearsal of how they would express themselves:
“It takes me a while to understand what I am feeling. Sometimes I need to talk to myself and vocalise my feelings in order to understand myself.”
When respondents were asked how easy they would find it expressing their concern about both hearing and memory loss, some interesting differences emerged between the two conditions. In the case of hearing loss, the vast majority (more than 90%) of respondents indicated they would be ‘comfortable’ or ‘very comfortable’ talking with a healthcare professional or audiology specialist about their concerns. This percentage dropped by more than 10%, however, when they were asked how easy they would find it voicing their concerns to a loved one – and the percentage dropped still further if the concern was being expressed to friends. Clearly there is a considerable level of apprehension associated with the possible consequences of such disclosure. For instance, only a minority of our respondents (just over one third) admitted they would feel comfortable talking about their condition with colleagues or work associates. This reticence may well reflect the fear of the possible negative repercussions of such an admission. Sometimes, however, it was simply a case of summoning up sufficient courage to talk to others about a condition they felt embarrassed about. As one person told us:
“I have used hearing aids for more than six years. To begin with, I was reluctant to reveal that I was deaf. I was embarrassed because I was in my late 40s when I started to use hearing aids and I felt there was a stigma attached to being deaf. But now I don’t’ care. If I meet someone new and have difficulty hearing them, I tell them I am deaf without hesitation.”
When it comes to people’s readiness to talk about memory issues, a rather different picture emerges. Even when people had no present concerns in this regard, many of our respondents suggested they would display a much greater degree of caution in voicing their concerns. For instance, even when talking to a healthcare professional about memory loss, far fewer claimed they would feel at ease than was the case with hearing loss. Similarly, there were a lower number of respondents who claimed they would feel comfortable talking with a loved one about memory loss than was the case with hearing impairment. And the same was true of talking with friends or with work colleagues. All in all, there was a large measure of agreement between our respondents that the topic of memory loss posed a much greater challenge.
The same disparity emerged when respondents were asked to assess how difficult they would find it when they were out and about in shops and other public places and might have to ask for assistance or support from shop assistants or other members of the public. In the case of hearing loss, 60% of respondents said they would feel reasonably comfortable in raising their concerns, whilst with memory loss the number was 45%. Readers of this blog will have their own explanations as to why this is the case, but one of our informants chose to provide their own thoughts on why it should be so:
“If deafness is stigmatised, how much more so is memory loss! My memory is fine at the moment, but it could be difficult to owning up to memory loss at work for fear that it could put my job at risk. Because of the link between memory loss and dementia, I believe that memory loss would be a heavier burden than deafness.”
Virtually the only situation in which our respondents claimed they would feel a similar degree of comfort in talking about their concerns was when talking to healthcare professionals. A large majority of those surveyed (more than 80%) indicated they would find it relatively easy talking with an audiologist or with a neurological specialist about their symptoms. This may, of course, be a reflection of the relatively high esteem in which those with specialist knowledge of the respective conditions are held. It may also be evidence of the fact that, once people have taken the momentous step of seeking professional help and advice, this may in itself be a confidence-enhancing move – especially for those who have so far been in a state of denial about the potential seriousness of their condition.
Given that the majority of people seem to prefer talking to healthcare professionals, perhaps greater consideration should be given to ensuring that that the routes that guide people to advice centres and support agencies are signalled more clearly than they are at present. It would appear that, in spite of the best efforts of the help-giving organisations and institutions, too many people are still being hampered in their attempts to seek advice.
The following blog will begin to explore the issue of how sensitive issues such as hearing loss or dementia are talked about and what kinds of additional support and advice might be provided.
(Part 3 and 4 of this blog series will be available on the News section of the OCN website on Friday 3rd September)